How can the views of disabled people be prioritised in care planning and delivery?
The sector is well aware of ‘co-production’ and its role in successful care planning and delivery. But is the demonstrated value of co-production being embraced fully by commissioners and service providers? Are disabled people’s views truly being heard, acted upon and continuously monitored?
The current landscape
A recent report from The King’s Fund would suggest not, no. The report, titled Towards a New Partnership Between Disabled People and Health and Care Services: Getting our Voices Heard, analyses research conducted alongside Disability Rights UK into the current landscape of disabled people’s involvement in health and care planning. The report highlights existing best practice examples but summarises that there are also several instances where the involvement of disabled people is lacking or felt ‘tokenistic’.
In addition, the report distinguishes between actions required of health and care organisations and of disabled people’s organisations (DPOs) to facilitate meaningful
co-production. According to The King’s Fund, health and care organisations should broaden their understanding of the societal barriers impacting on disabled people, while DPOs should do more to support health and care organisations to interact more productively with disabled people.
In an ideal world
The Social Care Institute for Excellence (SCIE) makes a series of recommendations to ensure that co-production is implemented effectively. Focusing on themes of culture, structure, practice and review, the recommendations fundamentally state that people who draw on care and support services should be involved from the outset of care planning, through to the delivery and ongoing monitoring of services.
SCIE also emphasises the importance of organisations clearly defining what
co-production will mean to them from the outset of care planning to ensure that it is implemented correctly, without deviation from the principles agreed. Organisations that achieve this will be best placed to deliver meaningful co-production initiatives that bring about positive change.
The heart of the problem
Disability Rights UK, in co-production with Norah Fry Centre for Disability Studies at the University of Bristol, argues in its position paper, Co-production – How Disabled People can (not) Break the Mould in Service/Workforce Development and Commissioning, that there is a distinction between ‘systems’ and ‘people’ that is standing in the way of co-production.
The paper understands that ‘people’ who draw on health and care services, due to their vulnerability, will gravitate towards the bigger ‘system’, unaware of their own power
to influence service planning and delivery through co-production. In turn, the paper suggests that the ‘system’ and its personalisation agenda has not gone far enough to empower the ‘people’ to be involved in enacting substantial co-production in the planning and delivery of health and care services. Lastly, the paper puts forward that ‘people’ can lose a sense of their peer identity as a result of interacting with the current ‘system’ and the resources ‘people’ possess are not being utilised sufficiently.
The following perspectives come from two people with lived experience of drawing on services.
Personally, I would change this question to ‘how can disabled and older people play an active role in the design and delivery of social care?’. Because we have the knowledge, passion and solutions to bring positive change. It shouldn’t be a ‘nice to have’, it’s an essential part of designing social care that works well for everyone. As someone who draws on social care, I am too often invited to meetings as the ‘lived experience voice’. Or I see organisations ask for people’s views on their plans. The problem is that these situations (and many others) usually have no genuine scope to influence or co-design. So, what does need to happen? • Build relationships. Often very last minute we are asked to ‘find someone with lived experience’. We can tell when we are a ‘tick box’ and not valued for our expertise and skills. Working well together needs trust and openness and these take time to build. • Start early. Bring us in early so we are part of creating the solutions (and you don’t have to fix it later). And not just for the design phase but delivery and evaluation too. Work differently. Too often we are expected to fit into your organisation. Meetings may need to be in different places, at different times and held in different ways to allow everyone to genuinely participate. Compensate people fairly for their time and work. Cut the jargon (it’s better for everyone!). • Widen the voices. There are some disabled people who are heard less than others, due to other inequalities. This takes active effort and working with people from those communities to bring in those wider voices. • Don’t just listen. Too often I give my views and then hear nothing. Or I see the final result and realise that our views were ignored. If you aren’t going to take action on what you hear, don’t waste our time. • Be honest. We are realistic and pragmatic; be honest about the challenges and what can be done or not. • Go further. Long-term disabled people should be employed in organisations and roles in the social care sector. This shouldn’t be a ‘nice to have’; we bring expertise and skills that are vital to create a social care that everyone can thrive in.
Anna Severwright, Co-convenor, Social Care Future @AnnaSeverwright
How can the views of disabled people be prioritised in future care planning and delivery? It’s a question I have often thought about along with other members of Learning Disability England. It is the driving force behind Good Lives: Building Change Together, which many paid supporter organisations and professional bodies are using to really examine their practice and make changes. For me, it feels as simple as saying: by treating lived experience with equal if not more weight than evidence gathered from professionals, through things like the ARC England Learning Disability Research Unit. What they share is valuable but only part of the picture. Too often when there are conversations about planning care, there are only professionals at the meeting. In any other walk of life, if you need to work out the right thing to do or understand if it is working, you go to the expert. We are your greatest asset. For me, to live a good, long and happy life, the number one thing is to be healthy – mentally as well as physically. To have the things in my life that many people take for granted: a place I can call home, a job I love, the right support for me when I need it. How can you prioritise my views – and those of other disabled people? By putting us at the centre of assessing whether the support is meeting our needs. Seeing us as equal, human. Good Lives has this at its heart. And I ask every professional to work out what their part is in making this happen. To take Good Lives’ work as a starting point and embed it in what you do. It’s not complicated stuff. We just need to talk to each other, listen to each other, then plan together. When things break down, it’s almost inevitably because people haven’t listened. So, my challenge to you is to think about how you are going to listen more, listen better and how you will transform what you hear into more people living good lives.
Jordan Smith, Self-advocate and Co-chair of Learning Disability England’s Representative Body @learningdiseng